EpiReg – a research and quality registry for epilepsy at Haukeland University Hospital, Bergen
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EpiReg is a research- and quality registry and biobank for patients treated at Department of Neurology, Haukeland University Hospital. The aim of EpiReg is to use the collected information to increase quality and excellence in epilepsy treatment. We also use the information for research EpiReg is initated and maintained by Bergen Epilepsy Research Group (BERG).
EpiReg was established in 2019 with funding from Helse Vest, later also from Helse Bergen. The regional ethical committee has approved it (REK 2018/586). The database is integrated with the hospital record system of the hospital so that all registered information is also visible in the patient’s individual hospital record. EpiReg was established in cooperation with Norsk Epilepsiforbund, the national patient organization, and it has continuous user support. EpiReg interacts with the national EpilepsiNett project supported by the Research Council of Norway.
EpiReg collects both patient-reported data and medical information. The aim is to include both initial patient information and regular follow-up data. The registry has a particular focus on pregnant women with epilepsy and on women of childbearing-age. Our future aim is to expand the registry to include all patients with epilepsy. Clinical information will be combined with biomarker studies. BERG has ongoing EEG research projects, and these projects also plan to use EpiReg-data. The recent EpiNy-project will combine biomarker and clinical data in first-seizure patients and at epilepsy debut. Inclusion in EpiReg is ongoing. Participants give their informed consent before inclusion and can withdraw from the study at any time. They can also demand that all previous data collected about them are deleted.
Contact information:
Email: epilepsiregisteret@helse-bergen.no
Tel: +47 55 97 5045
Nevropoliklinikk 5597 5121
Måndag – fredag 08:00 – 15:30
Gamle Hovedbygg, 2 etasje
Jonas Lies vei 71
5053 Bergen